Going to my first Entyvio infusion today

[Grandma McB]

My history of Crohns started in 1974. I was 21 years old and it took forever for a doctor to diagnose me. Crohns started in my large intestine. In 1980 had about 1/2 of large removed and reconnected. Then nothing until 2007 my colonoscopy showed my Crohns was were the small and large intestines connected and was narrowed. Had surgery and they removed the illiocelcal valve and reconnected the intestines. It took about 2 years and several drugs and finally was put on Humira which helped me tremendously! Now after my colonoscopy and ct I now have Crohns in a couple of places in the small bowel now besides where the small and large intestines were connected.

The doctor said I could change my Humira injection from every other week to once weekly or try the Entyvio.

Today I go in for my first infusion of Entyvio and I must say I am a bit nervous.

 

[24601]

I believe Entyvio takes quite a while to work so will you be doing any bridging therapy to tide you over until it gets to therapeutic levels? Something like prednisone, Entocort or enteral nutrition?

Are you adding an immunomodulator to prevent formation of antibodies?

Good luck with the Entyvio! I hope it's a wonder drug for you

You can read more about others' experiences with Entyvio in the sub-forum here

 

[Grandma McB]

I have been on Imuran 150 mg for quite some time. Doc was wanting to increase the level but blood tests says I am at my maximum. My first infusion yesterday went just fine. No reaction to the Enytvio.

 

[Grandma McB]

I have been on Imuran 150 mg for quite some time. Doc was wanting to increase the level but blood tests says I am at my maximum. My first infusion yesterday went just fine. No reaction to the Enytvio.

 

[Sharkgirl]

I just started Entyvio 6 weeks ago and am very slowly seeing improvement; I also take Imuran and Lialda. Hang in there if you don't have results right way (I started to get very frustrated until I understood that this medicine wouldn't be an immediate miracle drug and that I need to give it time), I am very hopeful that this will put me into remission! Good luck!

 

[Grandma McB]

Thank you for letting me know. Appreciate all the help and information that this forum has. I am 61 years old and was diagnosed about age 21. I feel very lucky that after my first surgery in 1980 and then until my 2nd surgery in 2007 I was not on any medicine at all. I actually had 2 surgeries in 2007 where they connected the small and large intestines had a hole so after I went home after the first one in 2007 I had to go back for a 2nd one and ended up spending a month in the hospital. What sent me into my surgeries in 2007 was that after a colonoscopy it showed that the intestines were narrowing down due to the crohns. Everyone's journey in living with crohns is so different. Good luck to you also on the Entyvio!

 

[Crohnzie Girl]

Hi all, I'm supposed to be on Entyvio but I'm scared. I took cimzia for 2 yrs and had to get an operation. In my eyes, what's Entyvio gonna do? Do drs even know the long term effects for this drug?

 

[Sharkgirl]

I was on Cimzia for two years and felt great but unfortunately it stopped working on me. I then got on Remicade and it didn't work as well as anticipated so I tried Entyvio. I was really nervous about starting Entyvio but in it all came down to me feeling better. I want to feel better and not have to call in sick to work all the time. The side effects are pretty typical. I was scared to because the drug is so new but again, I just want to feel better and don't want surgery so I took the plunge. I'm slowly starting to feel better and have high hopes. Did Cimzia work on you?

 

[Crohnzie Girl]

I don't think it worked as well as I hoped since I got really bad with my flare ups went on an antibiotic and caught C-Diff which is horrible if you've ever had it. I felt like I was too far gone for cimzia to work. Now that things have calmed down I'm still debating on this new drug. Entyvio it would be an infusion drip every 6 weeks for 30 mins. My hair is still falling out and when I get the sniffles it still takes me a little longer to go away than most ppl. I guess I just need a really really strong motive to once again be on another drug and to finally see some improvement.

 

[lgpcarter]

Hi all, I'm supposed to be on Entyvio but I'm scared. I took cimzia for 2 yrs and had to get an operation. In my eyes, what's Entyvio gonna do? Do drs even know the long term effects for this drug?

They've got about 2 years of data from the clinical trials and according to my GI and the reading I have been doing, it looks the like the side effect profile is "good" meaning no huge red flags.

 

[Crohnzie Girl]

Thanks Igpcarter. That's good news. But idk it's enough for me to take that plunge yet. Lol

 

[lgpcarter]

For sure! It is all about balancing the risks (and your comfort) of the side effects of the drugs vs the long term effects of inflammation on your body and damage in terms of intestinal scarring, etc.